Tags: arthritis, methotrexate, MTX, RA, Rheumatoid arthritis
Hmm, how many times have I read posts about self-injecting drugs and breathed a sigh of relief that I don’t have to do that? Too many to count. Well, that time has ended, my friends – I will be injecting my MTX in three weeks’ time, after my ‘education appointment’ with the hospital. Mind you, I gather from a small amount of on-line research that this is a very easy subcutaneous (under the skin) injection; not the sort of nasty intra-muscular injection that biologics users have to endure. It seems to be a simple (?!) question of using something like an epi-pen to squirt the MTX in with, but I will find out more when I go and get educated. Here’s hoping I get the sweet nurse I’ve been speaking to on the (yes, actually helpful) helpline, and not the bored and horrid nurse I’ve never liked from day one. We shall see. Either way I will endeavour to be a good girl, listen hard, take it all in and get it right first time. (Not getting it right first time could be messy!)
The reason I’m moving to this course is that I sometimes get stomach problems that may or may not be from the MTX and that many people who take the dose orally don’t get the full benefit as some of it is digested, rather than moving on to the bits it needs to go to in order to work. By injecting, I can keep to the same dose, rather than increasing and risking the side effects that go with that, but hopefully get more benefit from the dose as all of it will go straight to where it’s supposed to go. That’s the theory, anyway. Apparently there are no other advantages or disadvantages of injecting – other than the obvious mild unpleasantness I’m assuming for the injecting!
I’m nearly there, nearly through this flare! It’s still just the knee (although it’s now the knees and legs because although I’m trying to walk well with my stick, it’s putting pressure on the other leg!) However, I finished my dose of prednisolone today so I had to call the doc and say, ‘Not there yet, what should we do?’ She’s given me a few days more of 40 mg and then tapering it down day by day to nothing. Hopefully that will do the trick. Otherwise it’s the dreaded knee injection – the one I swore I would NEVER, NEVER, EVER, EVER HAVE AGAIN! (I also swore rather embarrassingly at the poor doc when she gave it to me.)
In spite of all that swearing, if it doesn’t clear up with the general steroids, that’ll be the way to go because I need to get mobile again and I need to be able to work a full day! I didn’t work the end of last week and today I lasted about 3.5 hours, and that was pushing it. I had to push it as we’re quite busy and had tight deadlines to meet – and one of the JPs was off with a migraine last week and the other junior penguin left early today to pick up the keys to her new house. (Well, I could hardly keep her back from doing something THAT exciting, now could I? And it was only an hour before she was due to leave anyway.)
I’m also very tired – I did sleep well last night but had two terrible nights before that due to a combination of pain and hot flushes (not a misprint, my American friends: we say flushes, you say flashes). Also of course fatigue is part of the joy of RA. Ho hum …
I’m so looking forward to being mobile and awake again – I don’t think it’ll be too long now … so long as I’m sensible, pace myself and don’t try to do too much too quickly. (Easier said than done of course. Wish me luck!)
I’m also going onto injectable methotrexate, rather than oral, but more about that tomorrow.
Warning: this is not an extensive list of things to do when you have a knee flare; everyone’s different. It’s a short list of things I need to do when I have a knee flare, but usually don’t!
- Phone the the helpline AND the GP within a couple of days.
- REST IT! Don’t pretend it’ll be fine if you just ignore it. It usually isn’t!
- Use the darned stick – it’s why you’ve got one, so you can use it. Yes, even in the house! Keeping pressure off a flaring knee helps.
- Use the physicool bandage – it seems to help a lot, especially in the morning, and it feels good too.
- ask for help and accept it when it’s offered. It all helps to keep the weight off the knee and let it mend.
- Loose some weight! Easier said than done! Must ask Carla for tips!
So I’ve been doing some of this over the last few days and the knee is SLOWLY mending. It’s been a week now and I’m still hobbling but hope to be (need to be) back at work on Monday!
So here I am, five to six days into a flare and three days into my prednisolone non-taper – it’s just 40 mg for seven days and then stop. Most of me is on top of the world with all these steroids sloshing about. Hands, great; feet, great; elbow, great; right ankle, only occasional twinges. The good ol’ left knee, however, is another matter.
Wren has her dragon, some people refer to Arthur the arthritis, but for me, I’m picturing tiny little microbe-size mice nibbling away on all my joints going, ‘like the mice on the mouse organ in Bagpus only way, way smaller. ‘Hmm, not as good as cheese’, ‘No, we’ve had better than this, Charlie-Mouse’. Then of course, a la Bagpus (with apologies to all my American friends who’ve probably never heard of him or his mouse friends) they’d start the inevitable song, ‘Eat the joints, eat the joints, nom nom nom …’ And then, finally, making their way around my body, and being beaten off by the steroids (possibly in the form of Bagpus or Emily telling them to behave … or is the point where I’m really losing my mind due to lack of sleep and knee pain?) they finally reach the safety of the mouse-hole in my left knee. ‘This is it!’ ‘Yay!’ ‘Yummy-yummy!’ ‘It’s the cheese mountain …’ And they there are to stay … but hopefully not for very long.
OK, that crazy dose of whimsicality has cheered me up slightly, which is what it’s all about really!
Back to reality – I’m at work (but I don’t know for how long) sitting with a freezing Physicool bandage round my leg, in a freezing office with snow coming down outside, but i have to say the bandage really is helping! I also remembered finally to get my stick out so I’ve been using that, which does help too. I really must remember to get these things out and use them sooner in future!
Guess who called me just a half-hour or so after I called them? Yes, the helpline! I immediately apologised for my rather grumpy message and the nurse then said she hadn’t actually heard it – just been passed on a note to call me. Darn – could have saved myself an apology! <Grin> So I basically told her what I’d said, only less grumpily, and she said she’d pass the info onto the registrar who I saw last, eight weeks before, and if he wanted to up the methotrexate then she’d call me back, otherwise not. She was very pleasant and not at all as brusque as I’ve made that sound – and of course she wasn’t the dreaded voice of the answer-phone message, who’s a nurse I’m not fond of! Anyway, she didn’t phone back, and that was anticipated as since the increase in MTX was only 8 weeks ago it hasn’t officially had a chance to work yet.
I thought it was interesting that the nurse didn’t offer any nursing tips – but perhaps she figured with seven years or so of arthritic knee behind me I should jolly well know what to do by now – which, frankly, is quite true! And she also said that I should call back if I found things not improving or getting worse – which I now feel much more encouraged to do than I did before after my one and only contact with the helpline seven or eight years ago, when they took two or three days to get back and then told me to see my GP!
Well I’ll give ’em that, he called very quickly… but he started off slightly fixated on the bloody helpline. I explained the problem and got, ‘Do you see the rheumatology nurse regularly?’ I said, ‘My next appointment is May.’ He said, ‘Yes, but what about the helpline?’ I said I hadn’t spoken to them this time but their usual response was, ‘Call your GP’ so, after checking my blood tests from the end of December and finding them ‘slightly elevated’ which was news to me, he agreed to a pred taper again, slightly grudgingly, ‘but please do call the helpline nurses. They are the experts in this.’
So I’m afraid I called the helpline and left the sort of message that guarantees no one will bother to call me back. Oops! It wasn’t deliberate but I’m in pain, tired, headachy and generally riled! I phoned up and got the usual, ‘There’s nobody here. I’m bored to death. You can tell by the tone of my voice, can’t you? If you really must speak to one of us please leave your telephone number, hospital number, date of birth and name and if you’re really, really lucky, someone might get back to you in the next couple of days.’ OK, OK, that’s not EXACTLY what it said, but honestly, it was ‘within 48 hours’ and I kid you not about the instantly recognizable tone of voice either! So I left a message along the lines of, ‘This is Polly Penguin, hospital number xyz, day time telephone 01234 567891, date of birth blah blah, I’m having a flare … I’ve contacted the GP and they’re giving me a pred taper but they’ve told me to contact you so I am. Good bye.’ Oh dear. Yes, I regret it now! It pays to stay on the good side of these people … but hey, I won’t hear from them I don’t suppose, and I won’t see them till May when they’ll have forgotten all about it.
If you remember my last brush with the helpline, you’ll know why I feel this way – but it MIGHT have changed since then, even if the phone message hasn’t.
Happy New Year everyone. I hope you all had good and healthy (as possible) starts to the New Year. I had a lovely Christmas and New Year – very relaxing, Christmas at Mum’s and New Year at ours with Mum and an old friend from uni… and no arthritis problems to speak of! Hurrah.
Unfortunately I can’t say the same now. I’ve been flaring since Saturday morning (it now being Tuesday morning) and last night the flare ramped up a notch from ‘flarette’ to the real thing so I’m sitting waiting for a call back from the doctor.
In the meantime, my nurse appointment that should have been 5th February has just been postponed by the hospital to 6th May – although I can always call the helpline, for what it’s worth, between times. It actually makes more sense to have it in May as that puts it slap bang between my last and next consultant appointments, and also if I see them in February and say ‘No change since you upped my methotrexate’ they’d probably just shrug and say ‘It’s barely been three months dear’, whereas in May it’ll have been six and if it’s really not working, then it’ll be clear by then.
As always the worst of it’s in my left knee but I’m also having ‘fun’ with my left elbow, right ankle (makes walking interesting!) and hands, especially at night and of course first thing in the morning. Fortunately I can still type so ‘putting beans on the table’ is not a problem yet. However, I foresee a day off in the near future to rest up the knee, as it’s impossible to do that while sitting at the desk in the office.
I think I need to make a list of the ‘aids’ that I can use to help when I’m having a flare, and then remember (HA!) to refer back to it so that I actually bring into the office things like the cooling spray, the stock, the neck pillow etc. etc. … none of which I have with me today of course! I’m also missing one of the junior penguins are her young daughter has flu so she’s had to take time off (quite rightly too!) to look after her … so I’m battling deadlines with 1.5 out of 3 of us down. (I’m counting myself as the 0.5!) I just hope the other ‘JP’ turns up for work today!
On the bright side, this being a Pollyanna blog, I’m mighty glad this doesn’t happen too often! My last flare was the end of September, only 3.5 months, but I know, and sympathize with, people who have to put up with this level all the time.
Here’s hoping the doc calls back SOON and gives me a pred taper (or something even better) without seeing me, like last time!
Tags: arthritis, consultant, doctor, flare, hospital, methotrexate, MTX, NHS, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
I’ve just had my April hospital appointment – well, it was supposed to be in April – then they moved it to June .. then they moved it to August … then they moved it to September … then they moved it to November… but this time it didn’t get cancelled. Right, I thought, I’ve seen no one at the rheumy department in 13 months, I’m going to make a LIST of things that I need to ask about, ’cause my memory’s shot. I know doctors hate lists but when you have to wait 13 months for an appointment you don’t want to forget anything, right? Right! Shame I forgot that I’d made the list then, and consequently forgot to ask about the dry mouth, although I think I covered everything else… except memory problems of course. I don’t think a rheumy clinic is going to be that interested in my forgetfulness anyway!
Everything else was more pain and stiffness in the hands and feet than previously, two nasty flares in my knees over the past year and a lump on my finger.
For the first two, my methotrexate has gone up to 20mg from 17.5mg. The nice boy (sorry, young man – I’m getting old, all the registrars look like children to me) was slightly horrified that I started off eight years ago on 5mg (or possibly 7.5mg) as they’re now much more aggressive and he said they’d never start anyone on less than 15mg so really 20mg is nothing. He also said if stomach upsets were a problem them can move me over to a self-injecting pen. I wasn’t too keen on that idea – I’ve only had two or three stomach upsets over the year that MIGHT have related to MTX and it’s possible that none of them did – I have a dodgy tummy anyway!
For the lump on the finger, he said since it was on my left middle finger and I’m left-handed it was probably just where I rested a pen. I said, ‘Who writes these days?! I almost never hold a pen! I type everything,’ to which he laughed, agreed and basically said, ‘Dunno’. It’s not painful and it’s not growing alarmingly so ‘dunno’ is fine for the moment!
The ridiculousness of the DAS score was brought home to me yet again. As the nice boy put it, ‘You might as well be amputated below the knee as far as that’s concerned’ and one of my main problems is feet! Daft! It also included a rating of how has the RA been THIS WEEK. Who gives a monkeys about this week – I haven’t seen anyway for 13 MONTHS! He took that on board too, bless him, and although I scored ‘low disease activity’ with four sore joints and pretty good thank you for this week, he accepted that my RA wasn’t under control if I’d had two bad flares this year; hence the MTX increase.
He also said if the appointments started slipping again, I should phone reception and point it out and they’d stop it happening – my faith in reception, on a score from 1 to 10 – zero. Not that I really think it’s their fault – they’re just the front line when it keeps happening and I phone up and say ‘Oy’ and they say, ‘Not our fault,’ which it’s not!
Anyway, I’ve got a nurse practitioner appointment in February – let’s see how much that gets moved – not that I need it in February – May would be more sensible, but I’m hesitant to cancel!!
Tags: arthritis, enormous cat, flare, knee pain, RA, RA flare, Rheumatoid arthritis, rheumatoid arthritis (RA), Whitby
Well my knee is very definitely better – From being barely able to hobble across the room, one predniselone taper later and I’m almost back to normal – I’m back at work, doing my lunch-time walks again, carrying on as normal … almost. The things is I’m getting twinges in that knee after walks, and I haven’t dared try exercise other than walking yet, and it’s generally more painful and tender than it was – I still have huge tracts of time when it doesn’t hurt at all, I’m delighted to say, but it probably hurts more and more often than it did pre-flare. I don’t know yet whether that’s because things are still settling down after the flare – it’s been nearly two weeks now which is long for me but not long in the scheme of RA things – or whether there’s been some damage done to the knee and this is the way it’s going to be from now on.
Here’s hoping it’s the former!
As to non-RA related stuff, I’m very sad to have to say that ‘Enormous Cat’ died a few weeks ago. We miss him enormously! Well, Hubby and I do. Tiny Cat 2 isn’t the slightest bit bothered! ‘All the more crunchies for me’ I think is her attitude.
On the brighter side, we had a fabulous holiday to Whitby, where we were lucky enough to get a room upgrade in the very nice hotel and had a generally lovely, relaxing time, and, in spite of seriously steep hills, the RA pretty much behaved itself. I did wimp out of a really steep and windy trip up to see a waterfall … but it wasn’t as though we’d planned that anyway. We just stopped in a village cafe for a coffee, got chatting to a couple and their very friendly (and perpetually hungry dog) and he said ‘Have you been up to see it yet?’ And we said ‘See what’ and it turned out there was a fairly famous waterfall there. I did manage to see the wonderful Whitby Abbey, which I had been really wanting to visit for years.
The Yorkshire Moors were magnificent, and yes, we did have some good weather too, in spite of the Abbey photo above with the foreboding clouds!
And Castle Howard was deeply impressive … although the only bit I really liked was the Arts & Crafts Chapel – amazing! (The ‘new wing’, built in 17-something, was also nice, but the neoclassic earlier part of the house I personally found rather cold, although Hubby loved it!)
All in all a very fine holiday – but could have done with another week!
Tags: arthritis, Arthritis Research UK, exercise, fatigue, flare, inflamation, knee pain, National Arthritis Week, pain, R.A., RA, rheumatoid, stiffness
It’s National Arthritis Week in the UK from 12-18 October and Arthritis Research UK are running a ‘story wall’ in its honour. My story (in 250 characters, which is a bit mad, but there you go, we’re the Twitter generation!) is up there somewhere on the wall – or will be soon. Why not go and put yours up too? You can see the wall here and put your own story up here.
10 million people live with Arthritis (in all its various forms) in the UK and Arthritis Research UK do a great job in supporting us, so I’m very happy to support them with their efforts for the week. They not only fund research, but also provide patient talks around the country so that we can find out what’s happening research-wise. Hubby and I went to a very interesting one a couple of months ago given by my very own rheumatologist – not that he recognised me – after, I haven’t had a six-monthly appointment for nearly two years, as the hospital keeps cancelling them – but that’s a whole nuther story! Posting about the stuff he was talking about is on my very long list of things to do!
I got latched on to by a very pleasant lady who tried to assure me that all I needed to do was take cider vinegar and honey to be cured. Strange that she was there and very clearly not cured, and yet still spouting this stuff. Funny, things people.
Anyway, I digress – please support Arthritis Week – there’s loads and loads of stories up on the wall already but the more the merrier, and it all goes towards helping arthritis research.